Dr Richard Fitton, Caldicott Guardian for NHS Tameside & Glossop asked the practice to fill out some questionnaires on how we are doing in enabling patients to access their medical records. The answers provided will go towards an overall report which will be presented to the local Care Record Development Board. We hope to produce a paper based on these findings to present to an international audience later in the year. All practice staff, clinicians (employed by the practice) and patients who have access to their electronic health records were asked to fill out the on-line questionnaire. A word of warning though - as the numbers of respondents are small, this study gives us some information about their views but further work is needed before we can make firm conclusions. However the findings none-the-less are encouraging and demonstrate the value of patient access to the GP record.

If you would like to fill out a questionnaire and are a patient of the practice then please feel free to send us an e-mail on htmcpatient@nhs.net with your name and date of birth so that we can confirm your details and then we send the questionnaire on to you.

In the interests of openness and transparency, please find below reports f all the answers we have had to date. For each group there are two reports – quantitative data as well as separate qualitative data.

1 person (17%) thought it was OK on how the practice excludes “data that is likely to cause harm” whilst 5 (83%) had no opinion. 3 people (50%) thought it was OK on how the practice identifies 3rd party data whilst 3 people (50%) had no opinion. 1 person (17%) thought it was easy to check contents whilst 5 (83%) had no opinion. However all clinicians (100%) would recommend records access to a fellow practice. Amongst comments, one clinician felt it would be good to get training on how and what patients actually see and another commented that patients love it.

Staff views:

5 replies out of a possible 39 (13% reply rate)

4 staff (80%) felt it was easy to recruit patients with 1 (20%) saying it was difficult. 2 staff (40%) felt it was a significant problem whilst 3 staff (60%) said it wasn’t. 3 staff (65%) got occasional queries after patients had been recruited whilst 1 (20%) got frequent queries and 1 (20%) virtually none. 4 staff (80%) felt the documentation they had received was clear whilst 1 (20%) thought it was unclear. 4 staff (80%) felt the system was convenient whilst 1 (20%) felt it had not made any change. None of the staff had heard any patients expressing any views about records access. Amongst comments, there was a concern raised about time constraints, recruitment seems to happen when Dr Hannan is there, staff not taken seriously but when a doctor suggests it then it happens. One staff thought it might be a good idea to have a drop in once a month for patients to see the system and learn about it rather than have to read about it. Finally one staff member thought it may be useful to ask patients to fill out a questionnaire about problems they may have encountered.

Patient Views:

63 replies out of a possible 600 (11% reply rate)

30 patients (48%) thought it was very easy to set up their records access with 2 people (3%) saying it was difficult. 58 patients (92%) had no queries about setting up the system whilst 5 people (8%) had many queries. 25 patients (40%) thought it was very easy to use the system with 95% saying it was average or easier and only 3 patients (5%) saying it was difficult. 41 patients (65%) found the records they read very interesting with only 8 patients (13%) being neutral and nobody found it boring or very boring. 51 patients (81%) found the records either reassuring or very reassuring but 1 patient (2%) had found it made them very anxious and another 2 patients (3%) slightly anxious. 48 patients (76%) found it improves their understanding of their condition but 15 patients (24%) said it did not affect their understanding at all. Nobody had found it had made their understanding worse. 49 patients (78%) felt they had a better understanding of how their care is being managed by medical teams with nobody feeling it made it more difficult. 41 patients (65%) felt they had a better or much better opinion of the practice since they have had access to their records with 1 person (2%) feeling their opinion of the practice had become less. None felt it was much less. 54 patients (86%) look up test results 48 patients (76%) look at letters. 45 patients (71%) look at consultation notes. 30 patients (48%) look at other information 14 patients (22%) plan their consultation 39 patients (62%) check what the doctor or clinician says. 26 patients (42%) see how their condition is going. Overall 28 patients (44%) felt it had helped them with their outpatient consultations with 10 patients (16%) saying it had not helped. 23 patients (37%) print information off before their consultation at the hospital whilst only 4 patients (6%) show live information via the internet. 37 patients (59%) have never been to the hospital so the proportion of patients who print off their records when they have needed to is actually 85% and 15% use the internet.

Patients accessed their records between none and 10 times in the past 2 weeks. One patient felt reading letters that have been scanned in can be difficult on the screen or even impossible to read even though it can be viewed.Another patient was unhappy that some records are too large and so cannot be viewed at all. It also seems that as the records become larger then there will be the need for tools that help the patient to search through the information. One patient wanted all records (hospital and nursing notes) to be in one place rather than in different places where a lot of time is wasted duplicating the information or as a result the information simply is not there. Colour coding of records might help to categorise information better and see patterns more easily. Patients would also like information sent back to them electronically from the practice too rather than going to the surgery to be told that you need to make an appointment with the doctor or nurse first. Finally patients do not like changes in the system too much.

Further functionality that patients would like to do

Patients would like to be able to book in with nurses as well as doctors. Patients would like to be able to order acute scripts as well as repeat scripts (challenging for us since these still require a doctor to OK as they are prescription drugs but what if they are drugs that are available for the public anyway e.g. ibuprofen or paracetamol?). Patients would also like to see an explanation of terms and abbreviations that are in the records or a glossary (something we used to have before we moved to the website).

Staff needs

Staff do not seem to know how the system works especially when the system goes down and patients are hoping to get some answers from the staff.

Issues relating to records

Patients recognise that we are continually trying to improve the service. Whilst patients recognised that they were in an ideal position to identify issues in their records that may be relevant or if a mistake arises, there is no clearly defined process for rectifying such issues or improve the way the practice learns from these mistakes so that they do not continue to happen (other than the standard NHS complaints procedure). One suggestion is that patients ought to be allowed to write memos or comments next to parts they disagree with or wish to add comments on. Expectations are sometimes greater than what we can deliver – it is not great when the system does not work. Or if it does work but the messages are not picked up especially if it is an important message.

Further steps Haughton Thornley Medical Centres would like to take:

Set up regular meetings for patients and staff to attend if they wish where they can learn more about records access and done in conjunction with the Patient Participation Group.

The findings of what patients are doing with access to their records are very revealing and needs to be publicised more. 86% of patients look at test results, 85% print their records when they go to the hospital, 76% look at letters, 71% look at consultations, 62% check what the clinician or doctor says, 48% look at other information, 42% look at how their condition is going, 22% plan their consultations and 15% show their records over the internet when they go to the hospital are staggering results that we would not have expected. We need to encourage patients to see these results so that it encourages others to do the same. This should encourage others to follow especially as very few patients seem to have come to any harm.

The system has made 3 patients anxious (1 very anxious) and 1 person felt their relationship with the practice worsened after getting access to their records. It is essential that we try to identify reasons behind these “unintended consequences” and see if we can do anything else to support these patients. If you are one of these patients and are reading this now then please contact the surgery and ask to speak to Dr Hannan or one of the other clinicians or of course the practice manager. Alternatively you may wish to contact the local care Record Development Board directly. We are here to help you, not to cause further distress.

We have produced a glossary of terms and abbreviations on the practice website for patients and staff to see. This would also be useful for any temporary staff that also wish to work here too as well as the trainees (medical students, post-graduate doctors in training including FY2 doctors as well as trainee nurses and others) that we regularly have and who may not be aware of these terms either.

Dr Hannan has created a video explaining the consent process in more detail and why it is essential for patients to be “tested” on whether they understand the information they are presented prior to being given access to their records.

We will put in place a process so that messages that come into the practice electronically are checked twice a day by a member of staff so that these messages are dealt with as part of “normal business processes”.

Dr Hannan has now produced a video which is now available on the home page informing patients and the public as well as staff what patients can do when they access their records. He will inform all staff to look at this video when they are able to. He will also encourage all staff who still do not understand to perhaps come to one of the meetings where patients can demonstrate the system or perhaps put a series of “drop-in sessions” for the staff to come to when the patients can inform them about the service too. This will help to build a stronger Partnership of Trust between patients and the staff too.

We will attempt to develop a system that allows patients to identify issues and inform us of them so that we can then follow them up and continue to explain where the issue is up to and how long it is likely to take to resolve. This is very complex as some issues may not be straight forward to resolve and may take a great deal of time. We recognise this is a very important area that we must devote more time and resources to but which may put a strain on a practice which is already very stretched. However this is essential to make the practice run more safely, effectively and to improve the patient experience even more. We believe a Partnership of Trust is needed between patients and the practice to support this. If you have identified any errors, omissions or mistakes or woud like to know more about the Partnership of Trust then please click here.

Many clinicians do not seem to know about harmful data or 3rd party data. This is because to date this has not been considered “essential” for clinicians to know about even though they are working inside the practice. We do not routinely code data as such which could then be excluded from the patient in some future records viewer. The findings of this questionnaire do however suggest that patients are not coming to harm as a result of lack of such knowledge by the clinicians. It is necessary for the staff who deal with these things (i.e. note summarisers and reception staff who scan letters in from the hospital for instance) to perhaps have a working knowledge of what needs to happen especially when data is being transferred into records. The Records Access Collaborative
has produced some interim guidelines
but these need to be quality assured before it is enacted. We therefore feel we should wait for further guidance. Of course if individual staff or others would like to know more then they can contact Dr Hannan, the local Care Record Development Board or the Caldecott Guardian for further clarification.

We await the final report from NHS Tameside & Glossop’s local Care Record Development Board to see what broader lessons there may be for us to consider and how we can take this work further forwards.

We hope to update this page as more issues arise or as we resolve issues. Feel free to contact Dr Hannan on htmcpatient@nhs.net if you have any further thoughts you would like to share on the findings.